Guest guest Posted April 28, 1999 Report Share Posted April 28, 1999 Hi everyone. I had written the doctor to ask about heel spurs, because my doctor asked me if I had heel pain when I was at Stanford last. I couldn't imagine why, considering I usually have toe and pain in the balls of my feet. I had an x-ray done, and the tech said it showed heel spurs. When my doctor called me with the results, he said my x-rays were fine. Go figure! Anyway, I have had some swelling near my arch, though I'm flat footed, in the inner side of my left foot. It feels fleshy, swollen and is really painful. I can't see that there is a bone near by, any thoughts? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2000 Report Share Posted May 18, 2000 I have to admit I agree with Dean in that I found prednisone to give the quickest relief from severe inflammation. When I was in flares before AP, it was the only thing that probably kept me out of the hospital ER. I did wean off prednisone but while getting on methotrexate. Luckily, I found the AP, weaned off methotrexate while starting Minocin at 100mg twice daily, every day. Am still on this dose and it has been a miracle. I also agree with Dean in that I probably am having such great results because I started AP " early " , i.e. within 2 yrs. of onset which is what I believe this means. FWIW, Dr. Trentham prefers to start patients immediately at 100mg. twice daily, every day, right off the bat with those who start AP " early " . He said he gets better results. So far, so good, no IVs and no other antibiotics either..... Babs RA 8/98, DX 4/99, AP 11/99 200 mg. Minocin 112 mcg. Synthroid 2 mg. Hytrin 10 mg. Lipitor Mestinon Vits. & Misc. Suplmts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2000 Report Share Posted May 18, 2000 Hello Joe: In my opinion, nothing works better than pridnisone for a quick control of inflamation. I've never taken methotrexate, but my understanding is it takes a while to become effective, and basically, it supresses the immune system- it doesn't directly attack inflamation like prednisone . It seems there is no standard for the right dosage of minocin. Some take it every day, and some every other day. Lots of folks seem to take several antibiotics , like minocin M-W-F and Biaxin or whatever on T-Th. I think to some extent it depends on what stage your disease has progressed. I caught mine fairly early in the first year (RA) so am only taking oral minocin 200 mg every day. Hopefully, won't need the IV's or multiple antibiotics. You have to find what works best for you and experiment some probably. I'm still in that mode myself as I just recently started the minocin. I'm sure you will get lots of first hand experience from others who have been at it longer. Regards ......... Dean. rheumatic psoriatic arthritis > Hi, > I'm looking for advice on psoriatic arthritis which I have had for years. It > has primarily affected my knees and I'm now in a major flare-up that has put > me on crutches. I've read the Road Back and looking at starting minocin > ASAP. Have questions about dosage and have seen reports advising 100 to 200 > mg daily, or every other day. Have also seen advice to build up over time. > Doctor is also advising starting methotrexate as this may relieve major > inflamation much quicker. > > Would very much appreciate hearing from anyone who has been there and done > that. > Joe > > ------------------------------------------------------------------------ > Remember four years of good friends, bad clothes, explosive chemistry > experiments. > 1/4051/0/_/532797/_/958661719/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2000 Report Share Posted May 20, 2000 Kate and Group I was diagnosed with " low level RA " (RF<10, which most authorities consider a negative indication) and started on antibiotic treatment, largely because my wife had done very well on it with her RA the previous year. This was mid '99, and I started on tetracycline; after a few months I asked for minocin (based on information on the Net) and stayed on that until March of this year; when I saw a RD, was diagnosed with PA (although I have a lot questions for this RD on my second appointment in June) and switched to Doxycycline. I can't say that I had a sudden change in symptoms with any of these changes, but I noticed some reduction in swelling after a while on the minocin, and even more with the doxy. Also, since I've been on the doxy, I have been able to cut back on the Celebrex (400 mg/day to 200/day), and I am thinking of trying to skip it for a few days. I tried that back in the minocin period and went right back on it. So overall, I think the treatment is helping. It could be because I have a mild case (swelling and some pain, but no heat or redness, and the pain is " uncomfortable " rather than " crippling " ), or because I started treatment early. The RD said at my first appointment that if I didn't show improvement in three months on the doxy, he would pressure me to take Arava. I think I have seen enough improvement to keep that in reserve for the chance of my symptoms getting worse. The possible consequences of long term use of antibiotics bother me too, but although people warn about them, I haven't seen the kind of specifics that I've read about the DMARDs. I'm much more afraid of methotrexate than I am of doxycyline. Maybe this shows my ignorance, but on this forum my ignorance will be corrected quickly(G). arjay > Kate Steinfort wrote: > > Dear Group, > > I have had correspondence with Adlard, but I was interested > to also hear from anyone emailing this group who might have had > experience with antibiotic treatment for Psoriatic Arthritis. I have > had Psoriatic Arthritis for 6 years, possibly longer. At present I am > going through a really bad phase. I only experiencing soft tissue > damage, but I'm suffering a lot of pain in the joints. I'm also > getting eye problems, which are very painful, and apparently can be > the result of the condition as well. > > I'm currently taking methotrexate and vioxx...but it really doesn't > seem to be doing anything. I'm thinking of trying this antibiotic > treatment, but am concerned about taking antibiotics on an on-going > basis as I feel I initially develop the illness as a result of taking > large amounts of antibiotics for a dysentery problem. > > Anyway to cut a long story short I would really like to hear from > others who have had success on the treatment. Do your symptoms > completely abate? Do you need to constantly take the antibiotics? > > Regards, > > Kate Steinfort > ---------------------------------------------------------------------- > > ---------------------------------------------------------------------- > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 I've been on AP for 1 3/4 years, gone through Mino, Doxy, Zithro, Clindy. It took 1 yr+ to see first improvement. It is VERY slow - but I think it is working. The 2 steps forward 1 step back progress makes it VERY hard to guage progress - but I'm sticking with it (I had some great days)... -Mike- -----Original Message-----From: Kate Steinfort [mailto:KateSteinfort@...]Sent: May 20, 2000 10:13 PMrheumaticegroupsSubject: rheumatic Psoriatic Arthritis Dear Group, I have had correspondence with Adlard, but I was interested to also hear from anyone emailing this group who might have had experience with antibiotic treatment for Psoriatic Arthritis. I have had Psoriatic Arthritis for 6 years, possibly longer. At present I am going through a really bad phase. I only experiencing soft tissue damage, but I'm suffering a lot of pain in the joints. I'm also getting eye problems, which are very painful, and apparently can be the result of the condition as well. I'm currently taking methotrexate and vioxx...but it really doesn't seem to be doing anything. I'm thinking of trying this antibiotic treatment, but am concerned about taking antibiotics on an on-going basis as I feel I initially develop the illness as a result of taking large amounts of antibiotics for a dysentery problem. Anyway to cut a long story short I would really like to hear from others who have had success on the treatment. Do your symptoms completely abate? Do you need to constantly take the antibiotics? Regards, Kate Steinfort To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 kate, I don't know much but I do feel that the dysentary probably predisposed you to PA, due to the bacteria-- not the antibiotics used to treat it. It sounds like your disease is progressing somewhat, and I'd say, go for it and try the antibiotics. You can take the Vioox and whatever else you're on till the AP protocol kicks in. Good luck. I'm sure you'll get some good advice and support from other group members. SEG14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 Kate I would second 's opinion. My diagnosis is reactive arthritis, and there are several others on the list with the same diagnosis or with psoriatic arthritis. ReA occurs after a GI infection with any of several known bacteria and micoplasms. I have been on minocycline for 8 plus months, and my 12-year shoulder problems are beginning to clear up rather dramatically. I would encourage you to give it a try. All you have to lose is the pain. Jean > kate, > I don't know much but I do feel that the dysentary probably predisposed you > to PA, due to the bacteria-- not the antibiotics used to treat it. It sounds > like your disease is progressing somewhat, and I'd say, go for it and try the > antibiotics. You can take the Vioox and whatever else you're on till the AP > protocol kicks in. Good luck. I'm sure you'll get some good advice and > support from other group members. > SEG14 > > ------------------------------------------------------------------------ > Up to 60% OFF food! > Buy Now and Shipping is Free. > 1/4016/0/_/532797/_/958933207/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 Hi all - We know of ex-patients of Dr. Brown and others who have been on this treatment for 20-30 years with no adverse side-effects, using the low-dose, intermittent protocol that Dr. Brown advised. One person who has recovered and has been on the antibiotics for 19 years is currently writing her story for our web page. Dr. Brown saw not one case of toxicity in the thousands of patients he treated with this therapy. Chris. >Kate and Group > >I was diagnosed with " low level RA " (RF<10, which most authorities >consider a negative indication) and started on antibiotic treatment, >largely because my wife had done very well on it with her RA the >previous year. This was mid '99, and I started on tetracycline; after a >few months I asked for minocin (based on information on the Net) and >stayed on that until March of this year; when I saw a RD, was diagnosed >with PA (although I have a lot questions for this RD on my second >appointment in June) and switched to Doxycycline. I can't say that I >had a sudden change in symptoms with any of these changes, but I noticed >some reduction in swelling after a while on the minocin, and even more >with the doxy. Also, since I've been on the doxy, I have been able to >cut back on the Celebrex (400 mg/day to 200/day), and I am thinking of >trying to skip it for a few days. I tried that back in the minocin >period and went right back on it. So overall, I think the treatment is >helping. It could be because I have a mild case (swelling and some >pain, but no heat or redness, and the pain is " uncomfortable " rather >than " crippling " ), or because I started treatment early. The RD said at >my first appointment that if I didn't show improvement in three months >on the doxy, he would pressure me to take Arava. I think I have seen >enough improvement to keep that in reserve for the chance of my symptoms >getting worse. > >The possible consequences of long term use of antibiotics bother me too, >but although people warn about them, I haven't seen the kind of >specifics that I've read about the DMARDs. I'm much more afraid of >methotrexate than I am of doxycyline. Maybe this shows my ignorance, >but on this forum my ignorance will be corrected quickly(G). > >arjay > >> Kate Steinfort wrote: >> >> Dear Group, >> >> I have had correspondence with Adlard, but I was interested >> to also hear from anyone emailing this group who might have had >> experience with antibiotic treatment for Psoriatic Arthritis. I have >> had Psoriatic Arthritis for 6 years, possibly longer. At present I am >> going through a really bad phase. I only experiencing soft tissue >> damage, but I'm suffering a lot of pain in the joints. I'm also >> getting eye problems, which are very painful, and apparently can be >> the result of the condition as well. >> >> I'm currently taking methotrexate and vioxx...but it really doesn't >> seem to be doing anything. I'm thinking of trying this antibiotic >> treatment, but am concerned about taking antibiotics on an on-going >> basis as I feel I initially develop the illness as a result of taking >> large amounts of antibiotics for a dysentery problem. >> >> Anyway to cut a long story short I would really like to hear from >> others who have had success on the treatment. Do your symptoms >> completely abate? Do you need to constantly take the antibiotics? >> >> Regards, >> >> Kate Steinfort >> ---------------------------------------------------------------------- >> >> ---------------------------------------------------------------------- >> To unsubscribe, email: rheumatic-unsubscribeegroups > >------------------------------------------------------------------------ >Save 75% on Products! >Find incredible deals on overstocked items with Free shipping! >1/4013/0/_/532797/_/958884424/ >------------------------------------------------------------------------ > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 Hi Kate, I'm just catching up on the weeks postings and saw your request. I was diagnosed with PA 12 months ago and started on the AP 3.5 months ago. Although my PA was probably not to severve in terms of what I have read others do experience, I was not prepared to sit back and watch it get any worse. Also, I was living on Voltaren, and the PA was being to interfere with my work (because of painful hands) and other activties like squash and sewing. I figured I had nothing to loose, so 3.5 months ago I asked my GP to prescribe the Minocycline, which he did supportively. For the first three months I have had my ups and downs, and I wondered if I was going to be one of the ones for whom the AP didn't work. There have been days when the Voltaren was not enough and I cried with pain, but I just kept going (with my fingers crossed!!). During this time, I have also tried Celebrex(to no avail) and Vioxx (which was as good as the Voltaren). In the last week, I feel like someone has waved a magic wand over me! Life is wonderful again. I've cut my Voltaren back to half the dose I was taking, and I've had virtually no pain! Also the last three months my SED rate has dropped from 56 to 24. I know that I've still got a long way to go, but I know that I'm on the right road, and things ARE getting better. I definately think it's worth a shot, you've got nothing to loose! Kind Regards, Helen --- In rheumaticegroups, " Kate Steinfort " <KateSteinfort@b...> wrote: > Dear Group, > > I have had correspondence with Adlard, but I was interested to also hear from anyone emailing this group who might have had experience with antibiotic treatment for Psoriatic Arthritis. I have had Psoriatic Arthritis for 6 years, possibly longer. At present I am going through a really bad phase. I only experiencing soft tissue damage, but I'm suffering a lot of pain in the joints. I'm also getting eye problems, which are very painful, and apparently can be the result of the condition as well. > > I'm currently taking methotrexate and vioxx...but it really doesn't seem to be doing anything. I'm thinking of trying this antibiotic treatment, but am concerned about taking antibiotics on an on-going basis as I feel I initially develop the illness as a result of taking large amounts of antibiotics for a dysentery problem. > > Anyway to cut a long story short I would really like to hear from others who have had success on the treatment. Do your symptoms completely abate? Do you need to constantly take the antibiotics? > > Regards, > > Kate Steinfort Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2000 Report Share Posted December 9, 2000 Psoriatic Arthritis Hi...My name is Ronnie. I have been lurking on this group for several weeks. I was diagnosed with very aggresive PA last year affecting my hands. Until then I was a professional guitarist and recording artist. I have been on Azulfadine, Methotrexate, Viox, Prednesone, Cortesone injections to my finger joints, etc. I am now on disability. Last week I finally had it with MX because it made me so sick and approached my rheumatologist about minocine therapy. He said that in his opinion it was Voodoo but seems to be effective in some cases and agreed to prescribe it. I took my first 100 mg dose last night. Three hours later I was itching with a slight rash and mild allergy symptoms with a metallic taste in my mouth. I took Benadryl and immediately got better and slept through the night. I am considering reducing the dose to 50 mgs and taking Benadryl for a week to see if I can desensitize myself but am fearful of a full blown allergic reaction. Although I have taken Tetracycline before my sister has a serious allergy to that class of drugs so I may have that tendancy. I would be interested to correspond with any who has experienced this situation, especially anyone with PA. RGDS Ronnie E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2000 Report Share Posted December 12, 2000 : I never had much psoriasis either. Just itchy flakey scalp and a quartersized patch by my left ear. I had that for 15 or 20 years before the arthritis. I never thought much about it except it persuaded to me cut my hair shorter. I had never even heard of Psoriatic Arthritis. When it started I went to a Hand specialist and he injected the affected joint with cortesone. I have read H. Schrammel's book. According to him, that was the worst thing I could do. I may have released a localized infection throughout my system. Before the arthritis I had what was called musculo-skeletal pain. My GP sent me to a Psrink who said it was caused by anxiety. In retrospect, I think he had cause and effect reversed. Two years ago I had a serious lung infection that was never really identified. After that I had sinus surgery because an MRI indicated a deep infection behind my left eye. This British Royal Surgeon suspected I had a systemic problem from the infection. The biopsy showed no infection but they did not do a PCR test for Lforms. When I had 5 joints among both hands affected last June I saw a Rheumatologist who diagnosed PA and started me on the " standard " treatment and gave me a rather grim prognosis. This was Dr. Jaffer. He is listed in the Best Doctors in America but I found the treatment nearly as bad as the disease. I started checking out alternatives including BioPhysical and Antibiotic therapies. Then I read Schrammel's book. Dr Jaffer is skeptical but agreed to provide me with the drugs. I now have the 50 mg minocycline capsules. I will try the reduced dosage tomorrow and hope I'm not allergic. I seem to have the classic pattern described in the book and made the classic mistakes. It's a weird situation for me. My wife is an Executive and a Scientist for Pfizer/Agouron La Jolla and my doctor is a personal friend of hers. If you know of a specialist in this therapy in or near San Diego, CA let me know. Re: Psoriatic Arthritis > > > >Hi...My name is Ronnie. I have been lurking on this group for several weeks. I was diagnosed with very aggressive PA last year affecting my hands. Until then I was a professional guitarist and recording artist. I have been on Azulfadine, Methotrexate, Viox, Prednesone, Cortesone injections to my finger joints, etc. I am now on disability. > > > >Last week I finally had it with MX because it made me so sick and approached my rheumatologist about minocine therapy. He said that in his opinion it was Voodoo but seems to be effective in some cases and agreed to prescribe it. > > > >I took my first 100 mg dose last night. Three hours later I was itching with a slight rash and mild allergy symptoms with a metallic taste in my mouth. I took Benadryl and immediately got better and slept through the night. > > > >I am considering reducing the dose to 50 mgs and taking Benadryl for a week to see if I can desensitize myself but am fearful of a full blown allergic reaction. Although I have taken Tetracycline before my sister has a serious allergy to that class of drugs so I may have that tendancy. > > > >I would be interested to correspond with any who has experienced this situation, especially anyone with PA. > > RGDS Ronnie E. > > > > > Ronnie: > > They diagnosed me with psoriatic arthritis about five months ago. I didn't have much psoriasis (a little dandruff) > but the arthritis had attacked tendons in most parts of my body. I took methotrexate (MTX) for about > two months, the " discovered " antibiotics by reading Scammell's book. I got my doctor to give me some (along with > MTX, and vioxx). He said to take 50mg a day. I took one, and got a strange vague burning/stinging reaction in > most of my " inflamed " areas, and some I thought were OK. It took about 3 dayds to go away. I then took another one, > and waited another three days. I slowly increased the frequency, and now I take one every day, and am weaning off > of the vioxx. (Dumped MTX about a month ago). Also found a new doctor. In the " roadback " protocol they mention > tests to determine if you are having a flare, a Herx, or an allergic reaction. > > Four months ago I couldn't write much or use a computer mouse. I can now do both pretty well. > > What part of the country are you from? I'm from Virginia, and could help you find a doctor in that area. > > You should probably take it easy with the minocin until you understand its effects better. My > guess is that the bacteria are allergic to it, not you. > > Do you have HLA-B27? > > Good Luck, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2000 Report Share Posted December 14, 2000 Hi My questions are addressed primarily to , Jeff and Ronny, since we all have the same disease (PA), but anyone from the list is welcome to provide his/her opinion. 1) AP is recommended for the Psoriatic Arthritis, but I noticed that Azithromycin, which I'm taking now, makes my dermatosis worse. Have anyone of you experienced a negative impact of antibiotics on your psoriasis? 2) Suppose I am cured of arthritis by AP, will psoriasis go away with it? 3) Is PA caused by psoriasis alone or is infection still necessary to trigger it? One of the physicians I contacted told me that both psoriasis and arthritis are manifestations of the same illness and I didn't necessarily have to get infected to get PA. 4) My disease could have started much sooner than I thought in the beginning. At least half a year before I was hit I'd started to experience pain in my spine, usually early in the morning, at the time of awakening. The pain was always gone some 5-10 minutes after I was up. I wonder if it could be the beginning of it. I also often had nasty pain in my spine after eating fatty food. This was also happening long before my fingers and toes were hit. Did anyone of you experience the same problems? Unfortunately, I am not familiar with Schrammel's book. Could anyone provide it's name? Thank you Re: Psoriatic Arthritis > > > > > > > >Hi...My name is Ronnie. I have been lurking on this group for several > weeks. I was diagnosed with very aggressive PA last year affecting my > hands. > Until then I was a professional guitarist and recording artist. I have been > on Azulfadine, Methotrexate, Viox, Prednesone, Cortesone injections to my > finger joints, etc. I am now on disability. > > > > > >Last week I finally had it with MX because it made me so sick and > approached my rheumatologist about minocine therapy. He said that in his > opinion it was Voodoo but seems to be effective in some cases and agreed to > prescribe it. > > > > > >I took my first 100 mg dose last night. Three hours later I was itching > with a slight rash and mild allergy symptoms with a metallic taste in my > mouth. I took Benadryl and immediately got better and slept through the > night. > > > > > >I am considering reducing the dose to 50 mgs and taking Benadryl for a > week to see if I can desensitize myself but am fearful of a full blown > allergic reaction. Although I have taken Tetracycline before my sister has > a serious allergy to that class of drugs so I may have that tendancy. > > > > > >I would be interested to correspond with any who has experienced this > situation, especially anyone with PA. > > > RGDS Ronnie E. > > > > > > > > Ronnie: > > > > They diagnosed me with psoriatic arthritis about five months ago. I > didn't have much psoriasis (a little dandruff) > > but the arthritis had attacked tendons in most parts of my body. I took > methotrexate (MTX) for about > > two months, the " discovered " antibiotics by reading Scammell's book. I > got my doctor to give me some (along with > > MTX, and vioxx). He said to take 50mg a day. I took one, and got a > strange vague burning/stinging reaction in > > most of my " inflamed " areas, and some I thought were OK. It took about 3 > dayds to go away. I then took another one, > > and waited another three days. I slowly increased the frequency, and now > I take one every day, and am weaning off > > of the vioxx. (Dumped MTX about a month ago). Also found a new doctor. > In the " roadback " protocol they mention > > tests to determine if you are having a flare, a Herx, or an allergic > reaction. > > > > Four months ago I couldn't write much or use a computer mouse. I can now > do both pretty well. > > > > What part of the country are you from? I'm from Virginia, and could help > you find a doctor in that area. > > > > You should probably take it easy with the minocin until you understand its > effects better. My > > guess is that the bacteria are allergic to it, not you. > > > > Do you have HLA-B27? > > > > Good Luck, > > > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2000 Report Share Posted December 15, 2000 I have not found that Zithromax affected my psoriasis, however Doxy is slowly helping the Arthritis. There is a high correlation between psoriasis lesion size and PsA (Psoriatic Arthritis), thus if one improves the other should too! I did find (as substantiated in trials) that Naprosyn and many other anti-inflammatories make my psoriasis worse. -Mike- Re: rheumatic Re: Psoriatic Arthritis Hi My questions are addressed primarily to , Jeff and Ronny, since we all have the same disease (PA), but anyone from the list is welcome to provide his/her opinion. 1) AP is recommended for the Psoriatic Arthritis, but I noticed that Azithromycin, which I'm taking now, makes my dermatosis worse. Have anyone of you experienced a negative impact of antibiotics on your psoriasis? 2) Suppose I am cured of arthritis by AP, will psoriasis go away with it? 3) Is PA caused by psoriasis alone or is infection still necessary to trigger it? One of the physicians I contacted told me that both psoriasis and arthritis are manifestations of the same illness and I didn't necessarily have to get infected to get PA. 4) My disease could have started much sooner than I thought in the beginning. At least half a year before I was hit I'd started to experience pain in my spine, usually early in the morning, at the time of awakening. The pain was always gone some 5-10 minutes after I was up. I wonder if it could be the beginning of it. I also often had nasty pain in my spine after eating fatty food. This was also happening long before my fingers and toes were hit. Did anyone of you experience the same problems? Unfortunately, I am not familiar with Schrammel's book. Could anyone provide it's name? Thank you Re: Psoriatic Arthritis > > > > > > > >Hi...My name is Ronnie. I have been lurking on this group for several > weeks. I was diagnosed with very aggressive PA last year affecting my > hands. > Until then I was a professional guitarist and recording artist. I have been > on Azulfadine, Methotrexate, Viox, Prednesone, Cortesone injections to my > finger joints, etc. I am now on disability. > > > > > >Last week I finally had it with MX because it made me so sick and > approached my rheumatologist about minocine therapy. He said that in his > opinion it was Voodoo but seems to be effective in some cases and agreed to > prescribe it. > > > > > >I took my first 100 mg dose last night. Three hours later I was itching > with a slight rash and mild allergy symptoms with a metallic taste in my > mouth. I took Benadryl and immediately got better and slept through the > night. > > > > > >I am considering reducing the dose to 50 mgs and taking Benadryl for a > week to see if I can desensitize myself but am fearful of a full blown > allergic reaction. Although I have taken Tetracycline before my sister has > a serious allergy to that class of drugs so I may have that tendancy. > > > > > >I would be interested to correspond with any who has experienced this > situation, especially anyone with PA. > > > RGDS Ronnie E. > > > > > > > > Ronnie: > > > > They diagnosed me with psoriatic arthritis about five months ago. I > didn't have much psoriasis (a little dandruff) > > but the arthritis had attacked tendons in most parts of my body. I took > methotrexate (MTX) for about > > two months, the " discovered " antibiotics by reading Scammell's book. I > got my doctor to give me some (along with > > MTX, and vioxx). He said to take 50mg a day. I took one, and got a > strange vague burning/stinging reaction in > > most of my " inflamed " areas, and some I thought were OK. It took about 3 > dayds to go away. I then took another one, > > and waited another three days. I slowly increased the frequency, and now > I take one every day, and am weaning off > > of the vioxx. (Dumped MTX about a month ago). Also found a new doctor. > In the " roadback " protocol they mention > > tests to determine if you are having a flare, a Herx, or an allergic > reaction. > > > > Four months ago I couldn't write much or use a computer mouse. I can now > do both pretty well. > > > > What part of the country are you from? I'm from Virginia, and could help > you find a doctor in that area. > > > > You should probably take it easy with the minocin until you understand its > effects better. My > > guess is that the bacteria are allergic to it, not you. > > > > Do you have HLA-B27? > > > > Good Luck, > > > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2000 Report Share Posted December 15, 2000 Hello Oleksandr! Geoff Crenshaw here. If you understand the concept of homeostasis, that the organism (in this case - you) will do it's best to achieve a 'balance' for survivability; the concept of " totality, " that we are a single unified organism, not disparate pieces compartmentalized into a warehouse; and the concept of health/morbific levels - mental, emotional, physical... then what you point to is an encouraging sign. Basically it seems you are saying the Azith is moving the symptoms to a more outward physical plane, i.e., dermatitis is less serious than deep depression, and skin ailments less serious than joint ailments. If you are 'cured' of the arthritis, would you be unwilling to live with psoriasis in exchange? Often the usual allopathic treatments we are given drive diseases deeper within us, manifesting as more serious ailments as each level of stasis is achieved. The movement of cure is opposite - with ailments moving more 'outward' and old symptoms reappearing. The real question may more correctly be, at what place will your body find a point of homeostasis using the drugs? Regards, ----------------------- Geoff ** Usual Disclaimers ** ----------------------- How can you have hope? Get under the blood of the Passover Lamb. EXO 12:7-3 / MAR 14:24 / REV 12:11 http://www.healingyou.org nonprofit Herbals, Homeopathics & Supplements http://www.800-800-cruise.com/index-aff.html Make money from travel! http://www.800-800-cruise.com 100,000+ travel deals in real-time >> Message: 7 Date: Thu, 14 Dec 2000 23:58:48 +0200 From: " Oleksandr Olesnevych " <oo4@...> Subject: Re: Re: Psoriatic Arthritis 1) AP is recommended for the Psoriatic Arthritis, but I noticed that Azithromycin, which I'm taking now, makes my dermatosis worse. Have anyone of you experienced a negative impact of antibiotics on your psoriasis? 2) Suppose I am cured of arthritis by AP, will psoriasis go away with it? 3) Is PA caused by psoriasis alone or is infection still necessary to trigger it? One of the physicians I contacted told me that both psoriasis and arthritis are manifestations of the same illness and I didn't necessarily have to get infected to get PA. 4) My disease could have started much sooner than I thought in the beginning. At least half a year before I was hit I'd started to experience pain in my spine, usually early in the morning, at the time of awakening. The pain was always gone some 5-10 minutes after I was up. I wonder if it could be the beginning of it. I also often had nasty pain in my spine after eating fatty food. This was also happening long before my fingers and toes were hit. Did anyone of you experience the same problems? Unfortunately, I am not familiar with Schrammel's book. Could anyone provide it's name? << Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2000 Report Share Posted December 15, 2000 rheumatic Re: Psoriatic Arthritis > > > > : > > > > I never had much psoriasis either. Just itchy flakey scalp and a > > quartersized patch by my left ear. I had that for 15 or 20 years before > the > > arthritis. I never thought much about it except it persuaded to me cut my > > hair shorter. I had never even heard of Psoriatic Arthritis. When it > > started I went to a Hand specialist and he injected the affected joint > with > > cortesone. I have read H. Schrammel's book. According to him, that was > the > > worst thing I could do. I may have released a localized infection > > throughout my system. > > > > Before the arthritis I had what was called musculo-skeletal pain. My GP > > sent me to a Psrink who said it was caused by anxiety. In retrospect, I > > think he had cause and effect reversed. Two years ago I had a serious > lung > > infection that was never really identified. After that I had sinus > surgery > > because an MRI indicated a deep infection behind my left eye. This > British > > Royal Surgeon suspected I had a systemic problem from the infection. The > > biopsy showed no infection but they did not do a PCR test for Lforms. > > > > When I had 5 joints among both hands affected last June I saw a > > Rheumatologist who diagnosed PA and started me on the " standard " > treatment > > and gave me a rather grim prognosis. This was Dr. Jaffer. He is > > listed in the Best Doctors in America but I found the treatment nearly as > > bad as the disease. I started checking out alternatives including > > BioPhysical and Antibiotic therapies. Then I read Schrammel's book. > > > > Dr Jaffer is skeptical but agreed to provide me with the drugs. I now > have > > the 50 mg minocycline capsules. I will try the reduced dosage tomorrow > and > > hope I'm not allergic. I seem to have the classic pattern described in > the > > book and made the classic mistakes. It's a weird situation for me. My > wife > > is an Executive and a Scientist for Pfizer/Agouron La Jolla and my doctor > is > > a personal friend of hers. If you know of a specialist in this therapy in > > or near San Diego, CA let me know. > > > > > > ----- Original Message ----- > > From: " Philip Downing " <john.downing@...> > > " Ronnie " <ronevans@...> > > > > > > > > > > > > > > > > > > > > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 > Hello to everyone, > I have just experienced a typical JARISCH HERXHEIMER REACTION after a single 200mg. dose of doxyciclin in the evening and now I feel much better in the morning. P for more than 20 years and PA assimetric moderate form more than 5 years. All these years I stayed withoutany treatment because of mild pain and swelling. Thanks to PA support group I am going to stay on antibiotics as less toxic medicine for a while, hoping to share my experience with somebody else taking doxyciclin or another oral antibiotics. > Best regards > Gordon. Hi Gordon- I think it would be great if you post to this list regularly about how it goes for you with antibiotic treatment. I joined this list a couple of weeks ago and have posted and replied to several messages, but most people don't seem to have noticed, or maybe didn't believe, that this treatment has brought my 28 years of severe PA under control, with a very safe drug. I get very anguished when I see all the people talking about ever higher doses of really dangerous drugs, and so many still finding little or no improvement. I think you have made a very good decision to start antibiotic treatment. It sounds as if you have found some good information, since you recognized the " Herx " reaction. That's a very good sign that the doxycycline is getting at the cause of the arthritis. It is good that you have avoided the immunosupressive drugs. This makes it more likely you'll respond quicker to the doxycycline, since your immune system is not impaired and can help the antibiotic work. It's important to talk to others who are using this treatment and read about it, because it takes real patience to give it a chance to work.It probably will not make you much better right away. Though some do respond quite quickly, it's very much a " two steps forward, one step back " kind of thing for most people. But if you stay with it, after a year or so you have a very good chance of feeling as I do- great, and having a hard time even remembering what it was like to feel bad. I hope you have a doctor who is familiar with this treatment. I had really no help from my doctor, who was skeptical of it until he saw how well I was doing- now he is a great advocate. I'd be happy to correspond off-list, and even if you do have a supportive doctor, I suggest you look at the roadback.org site if you haven't already, especially the message board, which is like this list, but all the people are on antibiotic treatment, and can be very helpful. very best wishes -- Greenly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Dear and Gordon, THANK YOU for sharing your information. I have looked into AP and plan to share it with my new doc once I finally get to see him (not until the end of June!!! Sucks to move to a new state!). My concern at the moment is that my husband and I plan to try to start a family in the next 6ish months or so and I don't think I can take the antibiotics during that time. This again is something that I plan to discuss with the doctor. I'm not sure how receptive he'll be--he's a teaching fellow in the department of Rheumatology at Duke Medical School, so hopefully he'll be open to something other than the hard core meds. Been there. Done that. Please keep us up to date about your progress. I'm off all drugs now except Aleve but I have some bad days and I'm really only about 60-70% mobile during the good days. I'm just tired of feeling like an old lady who everyone pities. I want to get back to being young and mobile (I'm only 28!) and doing the things that I love without having to risk serious consequences like liver failure. Anyway, thanks again for listening. I'd welcome any advice or additional comments, either here or directly to my email. Good luck!! Sinead _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Hi , I had an appointment with my rheumy today and, thanks to your posts, I asked him about antibiotic therapy. He said we could try it, but I'm not sure he's using the same protocol you started with. Also, he only wants to try it for a month and, if no improvement, start me on a trial of sulfasalazine. From reading your messages and the info on the Road Back site, this is not nearly long enough. I'm thinking I might send him a print-out of the AP from the Road Back. I've been stuck on the NSAID merry-go-round for about six months now and I'm ready to get off and make some progress! Oh, well...wish me luck. Take care, > > Hi Gordon- > > > I think it would be great if you post to this list regularly about > how it goes for you with antibiotic treatment. I joined this list a > couple of weeks ago and have posted and replied to several messages, > but most people don't seem to have noticed, or maybe didn't believe, > that this treatment has brought my 28 years of severe PA under > control, with a very safe drug. I get very anguished when I see all > the people talking about ever higher doses of really dangerous drugs, > and so many still finding little or no improvement. > > I think you have made a very good decision to start antibiotic > treatment. It sounds as if you have found some good information, > since you recognized the " Herx " reaction. That's a very good sign > that the doxycycline is getting at the cause of the arthritis. It is > good that you have avoided the immunosupressive drugs. This makes it > more likely you'll respond quicker to the doxycycline, since your > immune system is not impaired and can help the antibiotic work. > > It's important to talk to others who are using this treatment and > read about it, because it takes real patience to give it a chance to > work.It probably will not make you much better right away. Though > some do respond quite quickly, it's very much a " two steps forward, > one step back " kind of thing for most people. But if you stay with > it, after a year or so you have a very good chance of feeling as I > do- great, and having a hard time even remembering what it was like > to feel bad. > > I hope you have a doctor who is familiar with this treatment. I had > really no help from my doctor, who was skeptical of it until he saw > how well I was doing- now he is a great advocate. I'd be happy to > correspond off-list, and even if you do have a supportive doctor, I > suggest you look at the roadback.org site if you haven't already, > especially the message board, which is like this list, but all the > people are on antibiotic treatment, and can be very helpful. very > best wishes -- Greenly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 Hi Gordon, Could you please explain what Jarisch-Herxheimer is? Thanks in advance. Have a good and hopefully pain free day, Pat ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 --- Pat A McCauley <pat.mc@...> wrote: > Hi Gordon, > Could you please explain what Jarisch-Herxheimer is? > Thanks in advance. > Have a good and hopefully pain free day, > Pat > Hi Pat, When you start antibiotics, in some cases the response of the germ-killing effect comes out as a typical pyrogenic reaction (chill. fever and so on ). If it happens, it usually means that your choice is right and the medicine works for you. Have a Happy Pain Free Easter Morning. Gordon. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 , --- lsalexander56@... wrote: > Hi , > > I had an appointment with my rheumy today and, > thanks to your posts, > I asked him about antibiotic therapy. He said we > could try it, but > I'm not sure he's using the same protocol you > started with. Also, he > only wants to try it for a month and, if no > improvement, start me on > a trial of sulfasalazine. From reading your > messages and the info on > the Road Back site, this is not nearly long enough. > I'm thinking I > might send him a print-out of the AP from the Road > Back. I've been > stuck on the NSAID merry-go-round for about six > months now and I'm > ready to get off and make some progress! Oh, > well...wish me luck. > > Take care, > > > > > > > > > Hi Gordon- > > > > > > I think it would be great if you post to this list > regularly about > > how it goes for you with antibiotic treatment. I > joined this list > a > > couple of weeks ago and have posted and replied to > several > messages, > > but most people don't seem to have noticed, or > maybe didn't > believe, > > that this treatment has brought my 28 years of > severe PA under > > control, with a very safe drug. I get very > anguished when I see > all > > the people talking about ever higher doses of > really dangerous > drugs, > > and so many still finding little or no > improvement. > > > > I think you have made a very good decision to > start antibiotic > > treatment. It sounds as if you have found some > good information, > > since you recognized the " Herx " reaction. That's > a very good sign > > that the doxycycline is getting at the cause of > the arthritis. It > is > > good that you have avoided the immunosupressive > drugs. This makes > it > > more likely you'll respond quicker to the > doxycycline, since your > > immune system is not impaired and can help the > antibiotic work. > > > > It's important to talk to others who are using > this treatment and > > read about it, because it takes real patience to > give it a chance > to > > work.It probably will not make you much better > right away. Though > > some do respond quite quickly, it's very much a > " two steps forward, > > one step back " kind of thing for most people. But > if you stay with > > it, after a year or so you have a very good chance > of feeling as I > > do- great, and having a hard time even remembering > what it was like > > to feel bad. > > > > I hope you have a doctor who is familiar with this > treatment. I had > > really no help from my doctor, who was skeptical > of it until he saw > > how well I was doing- now he is a great advocate. > I'd be happy to > > correspond off-list, and even if you do have a > supportive doctor, I > > suggest you look at the roadback.org site if you > haven't already, > > especially the message board, which is like this > list, but all the > > people are on antibiotic treatment, and can be > very helpful. very > > best wishes -- Greenly > > > Hi , Thank you very much and best regards to your doctor. I have no doctors taking care of myself because I am a doctor and surgery is my job, I am also interested in different areas of medicine especially in artrology, anaesthesiology. We have much of common now because PA is our problem and AB therapy to control it is our choice. So, let us keep in touch and I would like to contact your doctor who prescribed you antbiotics and to encourage him to continue such practise. I promise to share all of my experiences to him. Take care of yourself. Gordon. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 --- Sinead Waters <almostturner@...> wrote: > Dear and Gordon, > > THANK YOU for sharing your information. I have > looked into AP and plan to > share it with my new doc once I finally get to see > him (not until the end of > June!!! Sucks to move to a new state!). My concern > at the moment is that > my husband and I plan to try to start a family in > the next 6ish months or so > and I don't think I can take the antibiotics during > that time. This again > is something that I plan to discuss with the doctor. > I'm not sure how > receptive he'll be--he's a teaching fellow in the > department of Rheumatology > at Duke Medical School, so hopefully he'll be open > to something other than > the hard core meds. Been there. Done that. Please > keep us up to date > about your progress. I'm off all drugs now except > Aleve but I have some bad > days and I'm really only about 60-70% mobile during > the good days. I'm just > tired of feeling like an old lady who everyone > pities. I want to get back > to being young and mobile (I'm only 28!) and doing > the things that I love > without having to risk serious consequences like > liver failure. > > Anyway, thanks again for listening. I'd welcome any > advice or additional > comments, either here or directly to my email. > > Good luck!! > Sinead Hi Sinead, I have just started antibiotics and experienced a J-H reaction after 6 hours and decreased swelling after 6 days. Best wishes. Gordon. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 In a message dated 12/04/01 08:11:24 GMT Daylight Time, vpspc@... writes: Thank you very much and best regards to your doctor. I have no doctors taking care of myself because I am a doctor and surgery is my job Hi Gordon, I have just joined the list, and normally do not like to reply or make a comment until 'I get my feet under the table' so to speak :-) BUT, I noticed that you said you were a Doctor, and wondered if you had an oponion on people like myself, who suffer with PA and AS (Ankylosing Spondylitis), on treatment? The reason that I ask, is because my Rhemy and Dermo say that I cannot be treated because one condition effects the other, so 'negates' the use of drugs, etc, because each condition is 'fighting' the other!! Have you any thoughts on this? Regards Mike (and Thanks for letting me join the group) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Thanks Gordon, for explaining Jarisch to me. Your articles are always interesting and informative. We all are up for anything to help. We can get info from all over the world by talking to each other. The Doctors can't get daily info like we can. Thanks! Have a happy, healthy day! Pat ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 > Dear and Gordon, > > THANK YOU for sharing your information. I have looked into AP and plan to share it with my new doc once I finally get to see him (not until the end of June!!! Sucks to move to a new state!). My concern at the moment is that my husband and I plan to try to start a family in the next 6ish months or so and I don't think I can take the antibiotics during that time. This again is something that I plan to discuss with the doctor. Hi Sinead- Your question is far beyond my knowledge. I think many women find their arthritis gets somewhat better during pregnancy, so maybe that's your best " drug " for the near term, and then try the AP afterwards. Don't be surprised if your rheumatologist is against it. Even now that the Arthritis Foundation and the Mayo Clinic have recognized it as an effective treatment, many rheumatologists don't yet know much about it, or heard it bad-mouthed years ago and haven't seen the modern results. I hope yours is different. Very best wishes, Quote Link to comment Share on other sites More sharing options...
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